December 2007 Archives
Hawaiian rain is nothing to fear. In fact, Hawaiian anything is nothing to fear. The presence of rain in a weather forecast is much like the appearance of dice on a casino table. Both bounce in and out of the picture at regular intervals and mean as much or as little as one cares to wager. Marlou and I had been walking, if that is the term for a person advancing on two legs and another on four wheels. The Turtle Bay Resort may be laden with all the ersatz Polynesia a sane person can swallow...obligatory tiki torches flaming to life at dusk, the $85 luau on the side lawn, small floral arrangements atop large cocktails...but never mind. It has views and trails, real paths that lead you on a paved journey through the tropical interior. The latter, it turns out, is dotted with holes, sweeps along mild ridges with pennants left mistakenly by Sir Edmund Hillary, dips into dales so perfect that they seem ready for aftershave. While the occasional human figure with a metal club seems more decorative than essential. Thus, golf. The trails skirt the course, perhaps provide non-fairway access to it for gardeners and golfers. Never mind. We were covering ground.
The ground, of course, does a splendid job of covering itself. Hawaii. Less than a mile down the path, a mechanical jungle smasher came at us, knocking back errant foliage with metal rollers mounted on a side arm. The Polynesian driver smiled and waved. Jungle branches crashed to his right. They would be back soon enough, and so would he. Us? Hard to say if we would be back at all. With Marlou's cancer, everything seems tentative and precious. The walk seems like the most important event of the day. Marlou's doctor has recommended regular aerobic workouts. We are on a mission.
The jungle gives way to our left, and the remnant of a World War II airfield dries in the sun. Marlou is no friend of rain, but here she is making little fuss. Squalls move off the ocean, spit and spatter over the ground, and move on. Puddles shimer on the expired runway, piles of landscape clippings line the edges, and a couple of giant aluminum Matson shipboard containers hold their secrets behind padlocks. What's in there? Fertilizer, lawn mowers? Or the last surviving Japanese kamikaze pilot, housed and protected by the victorious hotelier? Through the Matson wall, you can almost hear his ice machine inside. Probably a plasma TV too, which accounts for the exhaust vents near the ceiling. Netflix, room service, and one can get by in the jungle.
Marlou occasionally takes my hand. She does this as naturally as she has always done it. Though one must acknowledge that there's nothing natural about reaching for a paralyzed limb. But then there's nothing natural about Hawaii either. No, that's not true -- it's just that the natural life and that introduced by centuries of seafarers has become hopelessly mixed up. Mainland tourists are mixed up too, having never seen anything like these paradisiacal sands and palms and lava flows. It's too much to take in. Sorting out its origins is impossible. The one touchstone, the thing that is indisputably authentic and shatters the soul with its primal light, silences all at 5:45 p.m. Even the most venal and heathen among us cannot resist wandering out to the edge of Turtle Bay, the ice of his mai tai dully clinking in a plastic cup, to watch the day's sun descend into a tropical sea. A vast orange orb all but hisses into the ocean, clouds glowing, rays an artist's conception, air by Steuben. No one says a word. Hawaii.
Marlou smiles at me. Her look has roughly the same effect as the setting sun, and I glance away. At one point, I would have assured myself that this response was wise and cautious. Watch out for these ebullient types, for their radiance is groundless. And at the receptor site, misdirected, not to mention undeserved. Better be on the safe side. But now nothing is safe. An entirely different interpretation makes me turn away. I don't understand. I don't understand where love comes from, or hope comes from, and though I know where Marlou is coming from, the experience somehow shames me into silence. How can she smile at a time like this, apropos of nothing, and at me? I know the answer, and for me it is as painful to absorb as a sunset without photo gray lenses. Love is like the sun. It comes out of fusion and helium and pressure and expansion and keeps glowing and throwing parts of itself off which, despite the occasional solar flare, sustains life. It is a miracle. One gives thanks and holds hands.
I have not learned to conquer fear, only to mistrust it. We don't know what's going to happen. That's what I keep telling Marlou. Cancer is scary. A spreading cancer is terrifying. But I've been through enough terrifying things to know that dread is the real enemy. Life's surprises are horrid and wondrous and impossible to predict. Meanwhile, Marlou's smile emanates the same energy that drives photosynthesis, solar cells and if one is terribly lucky, marriage. My parents weren't so lucky, but that was their problem. Smiles don't burn. They're even fairly predictable, appearing like the dawn. I have always dreaded the future and feared the moment. Neither is necessary. I wedge my paralyzed right hand against Marlou's back. The left stays on the wheelchair control.
We stay on the path, pretty much, but as the afternoon unfolds we have to shift strategies...the hotel map is more whimsical than accurate. Eventually we emerge from the surrounding ironwood groves and wander straight across the golf course. Ahead, Marlou spots a knot of players and shushes me. The people are distant. They seem to be leaning on their clubs more than batting with them. Still, Marlou freezes like a hunter who was spotted the last dodo bird. We are to tiptoe, to the degree this is possible in a wheelchair, over the Norelco-trimmed lawn, down a rough slope and back into the forest. I doubt the necessity of this. My doubts do not arise from any base of knowledge, but more my own knowledge of the base. Raised by a self-absorbed, endlessly distracted and doubtless miserable mother, I am naturally suspicious of women. They have an agenda, it seems, and I'm not a part of it. Still, because the moment has become louder than the past, I rumble my wheelchair over the stones and off the course. I don't know why we have to be so quiet. But, then, I can't tell if the golfers are batting at the ball, putting at it, swiping at it or slicing at it. Furthermore, I don't really know if there are multiple balls. They could be driving -- that is the other thing they do with balls. Which is funny, because balls have been driving me for much of life. Another thought which, I know, is stimulated by Marlou.
And, when you come right down to it, what isn't? Which is why instinctively I keep telling Marlou that I regret nothing about our relationship. The illness. Even a shortening of our time together. Marlou has helped me become who I am. Whatever we face, we face together. The fact that we can discuss such matters, dire and fateful, says it all.
Throughout it, all three hours of it, I periodically checked on Marlou. I wanted to make sure she wasn't crying too much. We held hands occasionally, exchanged hugs in the dark and necked, as much as was musculoskeletaly possible. It's a long haul, Madame Butterfly, when there's an air of sadness and loss in your own life. Fortunately, the poignant beauty of the San Francisco Opera production was so infectious that we couldn't help emerging into the crisp December afternoon enlivened and enlightened. Gordon and Jeanette were with us. We wandered outside and paused for a moment in what was left of the sun. We had all watched Butterfly's life ascend and disintegrate as Japanese screens slid across the stage. Spooky kabuki, and very affecting, and now it was time for something else. I yanked out my mobile phone. Traffic honked on Franklin Street, while Marlou and I argued about where to attempt an early post-matinee dinner. The maître d' at the Zuni said there was no wait. But, at this pre-reservation time of day, things could change. The Zuni was too far, Marlou said, and the day too cold. Fine, I said, meaning the opposite. Jeanette asked if I was okay. Getting older, I said. A standstill. Some discussion. In the end we were off, heading for the Zuni Café.
By any sensible standards, it's an expensive restaurant. But since Marlou got ill, I haven't been sensible, and my standards, and priorities, have shifted. Moments are precious. Moments with the four of us seem priceless. Jeanette has been in a wheelchair most of her life. Gordon has spent half of his life with Jeanette, and I can say the same of us. We've known each other more than 30 years. So, why not roll down Franklin Street, Jeanette and I under battery power, Gordon and Marlou choosing neuromuscular propulsion. Headed for the Zuni.
The restaurant is on one of those pie-shaped San Francisco street corners, wedged in the acute street angles of some post-earthquake urban planner. The entrance is off an alley, and that's where I went barging in. People in power wheelchairs do a lot of barging into things. Perhaps people more delicate and refined than myself can maneuver a joystick subtly and inch through an open door. But not me. My footplates hit too hard to do anything but fling, even bang, a door open. Any door. Even this particular door which brought me face-to-face with the two less-than-smiling, moderately snooty, pair behind the reception kiosk. There are four of us, I said, taking in the Zuni crowd, thirtysomethings and fortysomethings sunning themselves on the windows, drinking and looking prosperous and sportif, a whole evening and a whole lifetime before them. With me before them, too, watching the young man and woman behind the reception podium. Their expressions, particularly his, darkened. He drew in his breath, set his jaw, moved his eyes up and down an apparent list, speaking before meeting my gaze. "Sorry, but it's going to be about an hour and a half."
I was old, taking up lots of air space in a bulky wheelchair with thick tires, blasting into a soirée for the young, fit and successful at an hour when no one took reservations, and the mission having failed, it was time to abort. I rolled outside and explained things. A long wait. Let's go. I rolled across the alley, assuming others would follow. No one did. Gordon went inside and asked how long the wait was for a single diner. He left before he got an answer. Jeanette joined me across the alley. Gordon muttered that he'd seen this sort of thing too many times. Rolling up Market Street, he told me about watching maître d's place Jeanette's wheelchair next to the kitchen door, then move her somewhere even less desirable...under a stairway...too close to a restroom. It made him angry, he said. At the moment, all this talk only made me retreat, retract my head between my shoulder blades like an experienced tortoise.
What would you do, I asked Jeanette? She ought to know, after all. Jeanette has been handling restaurants, and restaurants have been handling her, for decades. I have been in a wheelchair for less than 15 years and have some catching up to do. And the Zuni encounter had not occurred in one of my more robust and expansive moments. Marlou and her health are on my mind.
I would look at them, Jeanette told me. I would make eye contact, let them know through my expression that I was perfectly aware of what was going on. And wait.
I asked her what was going on. Jeanette seemed surprised, mildly amused. Hadn't I been around the disability block? Didn't I know?
I seems that I've had a lifetime of knowing and not knowing. I am sensitive enough to pick up what's happening, yet so easily shamed and unnerved that I can swallow down my suspicions. Yes, there was something going on back there at the Zuni. How would Jeanette describe it? Open discrimination? Cripple hating?
No, no, she said. They just think that wheelchairs are big, obtrusive and trouble. They didn't know what to do with two of them. Though, at the last minute, they had tried. The woman from the Zuni's front desk had wandered outside and offered Jeanette a couple of cocktail tables. If we wanted them. Marlou went in, judged the space, and decided two wheelchairs wouldn't fit. The hostess knew she hadn't handled us very well, Jeanette said. No, it wasn't pure discrimination, just human ignorance and bias. Measure a wheelchair, Jeanette said, and you'll find that it doesn't take up much more space than a conventional seat...which patrons tend to slide around anyway.
And wheelchairs, being more maneuverable, can actually adapt to space better, I thought. But I thought this too late. We were gone. The moment of confrontation was lost. I could see how it would have gone. "An hour and a half wait, I'm afraid." Oh? I just called. There was hardly any wait at all. Wonder what happened.
Would that have worked? Would that have made any difference? By now we had turned up Franklin Street and, blocks being short in this part of the City, dipped down curb ramps and crossed intersections, one after another. I never forget why this is possible. Curb cuts, the wheelchair spaces at the Opera House, the accessible toilet back at Zuni, all this exists because someone yelled and screamed and made a general nuisance of themselves. Did they go on yelling and screaming a bit too long? Yes, sometimes. More commonly, did my generation's disabled pioneers permanently cast themselves as outsiders, forever stuck in an us-versus-them worldview? Oh, I suppose. Still, there's not a major street in San Francisco a wheelchair can't cross...well, at least not many.
"My friends in Washington wouldn't put up with what happened at the Zuni," said Jeanette. She was speaking of disabled advocates in various government branches and NGOs. I know some of these people, having worked with them decades ago. We have gone our separate ways, yet with me in a wheelchair our ways may be converging. They're too old to protest. I'm too old to forget what they accomplished. Particularly now as we roll into Absinthe, another brasserie near the Opera House. This time I let Jeanette handle it on her own.
There's no room, she says rolling out, but there's no bitter feeling either. The maître d' was a nice guy. He's sending us next door to the coffee bar in the wine shop. The place turns out to be self-service, but the Hispanic guy behind the counter eyes the two wheelchairs and decides to become a waiter. First thing we know, he's at our table taking orders. One croque monsieur, one lentil salad, wines. We have a convivial meal, rich in conversation and calories, without the haute price.
On the way out of the coffee bar, I make it a point to roll up to the cash register and thank the man who helped us. Maybe that's the deal. We acknowledge people who are kind. We confront those who aren't. So indecorous, so high profile to make a fuss in a restaurant. Yet, like Gordon, when I'm angry, I can make a fuss myself. More precisely, I don't worry about fussing. I simply get assertive. Actually, within myself, I simply get clear.
Marlou and I are staying close to home these days. In a good week, I manage to drive my van two, maybe three, times. I fuel up the car once a month, whether I need to or not. Things have scaled down in a natural way. Our month in Europe was a splendid one. But I still recall too much of the bodily aches and physical discomfort. It's good to be home. It's good for many reasons. Some are elusive. With cancer hanging over Marlou, and over us, the trip, its timing and its ardors, had a faintly urgent, if not panicky, sense about it. See the world before it no longer sees us. Now I see the trip itself. See that we had to do it. And see that we now have to do something else.
By process of elimination, if nothing else, "journey" gets redefined. Where were we trying to "go?" Now by sticking close to home, the real travels jump out of the walls. I can barely remember what occupied our attentions before Marlou got sick. Moving...or finding a condo in Menlo Park...dealing with our old cars...saving versus spending money -- all these things seem to have been on our minds. Some of them still are, but they feel like technical details. Life and death are staring us in the face. And we stare back. What do we see?
This morning, Marlou set off for work, followed by one of her three-monthly PET scans. Tests like this are, and may always be, part of her life. Each reminds us of the possibility and maybe the likelihood of cancer's recurrence. Or I can easily view Marlou's checkups, and my own, as a hurdle. One jumps, lands on the other side, keeps running. The problem is that I'm tired of running. I would prefer to freeze this track-and-field moment in midair. I'm approaching the hurdle... or Marlou is...and what's up ahead...hangs, like a runner in a freeze-frame leap.
Death. Marlou's or my own? Which am I fearing more? There's a reason why I just had safety railings installed in our bathroom. I can imagine my neck-shattering fall to the tile floor, my paralysis now total...an experience approaching death. Or...I can imagine Marlou gone, her side of the bed empty, everything empty, me bumping my wheelchair around a too large apartment. Life feeling blank and numb.
Often as I go to bed, as I turn out the light, I remember the thing I have forgotten. It's the possibility of reaching for Marlou, of getting and giving a hug. More than the embrace is the aching need behind it and the solace it provides. Perhaps this is uniquely me. All my life I have longed to be held and comforted. Now, with the possibility of such warmth and comfort and wholeness going away -- I tend to go away myself. Better than feeling needy. Better than feeling period.
Marlou has her own avoidance techniques. A year ago, long bouts of television-watching or PC-staring went off in me like aircraft collision alarms. Now I mentally hit "snooze" and try to get some rest myself. Neither of us can face everything all at once. We both run from reality. The wonder is that we're able to face mortality and our uncertain future at all. The miracle is that we can face it together.
So what has to be faced? What is it about death?
The anticipation of death -- my own -- is tinged with panic. Of course. The ultimate terror. And yet it isn't like this for everyone. In other places and at other times, death was part of the landscape. People knew it all might end. The possibility was there. Not imminent, perhaps, but there. Logically, I'm supposed to be dead already. Not everyone survives a gunshot to the spinal cord. I've had 40 years of luck -- what else can one call it? How much luck, or life, is one entitled to? Both will run out. Meanwhile, what can one be but grateful?
So much for logic. Fear nibbles away at the soul. Yet there remains a choice. Face it or fear it.
What if Marlou dies? What would the afterlife, or the aftermath, be like? What would I need?
In my worst imaginings, I die alone. I fall, and am scalded to death, in a shower. Alone. Much worse, I am doing some repairs on the Space Shuttle somewhere high above the Kennedy Center, my tether snaps and I fly off into the cold emptiness. Yes, it's a silly fantasy. Except for the cold emptiness. That lies at the heart of my fear.
The problem with fear is, simply put, that fear is no predictor. Anticipation is always different from reality. That's why living in the moment makes logical sense.
I have a good feeling about Marlou's current health. So does she. In fact, so does everyone who meets her. Marlou looks fine, feels fine, is fine. My good feeling extends to her cancer scan. I'm being positive, though I'm not feeling very positive about being positive. What does it matter how I feel about anything? My good feelings can't insure Marlou's good health. Perhaps it's foolish to hope for the best. Life so often delivers the worst. The anticipation of cold emptiness, panicky abandonment...that's always there. So, since you're already half feeling the worst, why not hope for the best?
